​When my nurse aid gets here every morning, the first thing she does is preparing my breakfast, which consists of a fruit and yogurt shake, prune compote, pieces of bread pudding, and water. For quite a while, swallowing the shake was an operation: to avoid it to go down the wrong pipe, I had to take half a spoon on my tongue, push it down with my tongue muscles, and tighten the muscles of my swallowing apparatus to send it through my pharynx. Since my hemangioma’s bleeding, I’ve lost my ability to swallow hard solids and liquids, especially thin liquids. That’s the reason for the operation. And when I’m swallowing water, I have to focus on each step and do it very slowly so as not to choke (I talk about it in the Water chapter).
Recently, my nurse aid brought me breakfast, shake included. I stirred it and started the steps of the operation: I filled half a spoon, put it on my tongue, and pushed it down with my tongue muscles. But when I was ready to concentrate on tightening the muscles of my swallowing apparatus, they tightened on their own without my effort! I was both happy and doubtful. Didn’t I need to make a big effort? Maybe just a tiny one?
After breakfast, it was time for speech exercises: breathing, flexing my mouth against the resistance of face flexors, blowing water with a metal straw, saying “a” and “e” for seven seconds or longer, sing a song, and read an excerpt of a book. Every exercise after the first two requires the use of my diaphragm to push the air I inhaled across my open mouth. And after the “a” and “e” exercise, I have to practice swallowing water (a thin liquid) four times. When it came the time to swallow water, I did the first steps (put the water on my tongue and pushing it down with my tongue muscles) veeery slowly. But when I was about to focus on tightening the muscles of my swallowing apparatus, they tightened on their own!
Ever since my success in swallowing liquids, I’ve been waiting for the tightening of the muscles to come, ready to tighten them; and every time, the muscles have tightened by themselves. I’m still doubtful, but despite my doubtfulness, and despite my need to verify the restored ability to swallow, deep down, I feell a quiet happiness, and a sense of achievement goes with me wherever I go.

​After I answered “yes” to the nurse (see Decision chapter), the neurosurgeon and his office got the ball rolling. Sophia, the nurse who worked closely with the neurosurgeon, called us and asked if Eric could drive me to the hospital so that I could have a CAT-Scan. Then, we would both see him. The neurosurgeon checked my scalp and told Eric that it needed to be shaved and washed daily to take off all the dirt and dandruff. That way, it could be checked for any sign of infection. This will be the last surgery, he said. And he was right; there were traces of the many surgeries that had been performed on my head to take out the hemangioma, to take out the temporal bone, to put in the prosthesis, and to take out the infected scalp, as well as the bone plate, as a precaution. That meant a lot of incisions and sutures. Performing yet another surgery was a big risk to take. When we asked him if he had set a date, he said that it would be within four weeks. I did the numbers and came up with April 12th.  
From then on, Eric started to shave and wash my head thoroughly, treating my exposed brain with great care. After a week, he emailed pictures of every angle of my scalp to Sophia. She was very happy with the result and said she would show them to the neurosurgeon. She ended the email asking Eric to send her pictures the next week. Eric continued to shave and wash my head and emailed pictures to her again. But this time he got a different reply: the neurosurgeon wanted to show them to the plastic surgeon. Then, Eric got a call from the plastic surgeon’s nurse.She said that he wanted to examine my scalp because he’d seen a red spot. The nurse suggested an online appointment. Guess for what date. Yes, you’re right. For April 12th! I was very disappointed. I had such hopes of throwing away the helmet and sitting up to read and write.
And there’s still another consequence of this delay. When I look at myself in the mirror, I’m faced with a foreigner. My mind stored pictures of my wedding, my trips with Eric and with Eric and Nathan across Argentina, and our family walks on the beach in Newbury Port. The face in my mind has nothing to do with the face I see in the mirror. Now Eric and I will have to wait for the surgeons to approve of the state of my scalp and, based on their approval, decide on the right date of the surgery – provided that there are an operation room and a recovery room available. So, as always, I’ll have to wait patiently. And never brush my teeth…

​Last Tuesday Eric and I went to the hospital for a double appointment with the neurosurgeon and with the plastic surgeon. They wanted to examine my scalp to assess its condition for surgery: they needed to put back the bone plate that the neurosurgeon had taken out (see Adventure chapter). The neurosurgeon was concerned about the health of the skin because of the number of surgeries I’d undergone. That’s why he wanted discuss with a plastic surgeon the need for skin expansion. Our first appointment was with the neurosurgeon. Since it was in the morning, we had to leave early. Eric made my breakfast, and I ate it quickly. Then, we left for the city. We got to the hospital, put on our masks, went through several checks of vaccine shots and proof of negative tests, took the elevator to the neurosurgery department, and went inside the office to wait for him.
After lunch, we went to the plastic surgeon’s office. There, a resident saw me because the surgeon was performing an emergency surgery. The resident was new to the profession, as he told us over and over. So, he talked to me about methods and complications in such a way, that after hearing him I was convinced that I didn’t want to submit myself to this surgery. Fortunately, the surgeon came back. He examined my scalp and said it had already been expanded. Although he admitted that coplications might develop, he didn’t attach such significance to them. Then, he described the potential surgery step by step. In short, his attitude made me feel confident about having the operation (but my fear, though diminished, remained). After this appointment, it was time to go home.
When we got back, our conversation with the surgeons was fresh on our minds. We discussed the pros and cons of replacing the prosthesis: safety and quality of life (I would no longer have to lie down in bed all the time!), versus complications such as infection, bleeding, and clots. We promptly chose for having it. Yet I couldn’t but feel haunted by memories of my past coma, even if I was aware that this operation was fundamentally different.The next morning, when I talked to my older brother about it, he had no doubts about the need to replace the bone plate.
Then, in the evening Eric and I received a call from the neurosurgery nurse asking if I had made a decision regarding the surgery: was I going to go ahead with it? I said yes. After she hung up, I felt relieved and content. Today, several days later, the fear is still haunting me, but I think of myself without a helmet and going on the deck in my wheelchair, and I’m happy that Eric and I leaned toward the replacement.

​After the surgery, when I was transferred to the Recovery Room, Cy, the sweetest and most compassionate nurse, found a real bed for me. I could raise it by pressing a button, which I did promptly – I was concerned about not being able to swallow my post-nasal drip and saliva. Then, when I was transferred to the ICU, I asked the night nurse to help me sit up. When I woke up the next morning, my arm and hand looked very different from what I remembered prior to the surgery: they were bent at the elbow and the wrist, and my fingers were closed. What‘s more, both felt very weak. When I recovered and my sutures evolved as expected, I was discharged with a PICC line, an extension tube, and a vial of Oxacillin in order to finish the course of antibiotic. As time went by, I kept doing what I usually do: reading and writing, having lunch, doing my exercises, and resting. There were some changes, though, because Oxacillin is quite strong and it tired me, and because I had a PICC line in my left arm.
Gradually, my arm and hand got increasingly weaker; I couldn’t “feel” where my arm was; I had a hard time moving my leg and couldn’t balance; I couldn’t find the words to speak, either in Spanish or in English; I couldn’t distinguish left from right; and I lost vision with my left eye. At first I thought it was a setback caused by the surgery and it would go away soon. But it never went away: it just got worse. When Kelly, my occupational therapist came to work with me, she advised us to call my neurosurgeon’s office. Eric did so, and the nurse called him back to say that he should drive me to the ER.
We went there the next morning, and they did a CAT Scan to know if I’d had another hemorrhage. The image was clean. So, I had a brain MRI, and it showed no infection. It was 7:30 in the evening. The neurosurgeons came in and said that since there was no sign of a stroke, it was time for the neurologists to decide, but in the meantime they wanted to do an experiment. They asked me to lie down in the stretcher, and I agreed despite my discomfort and nervousness. The woman neurosurgeon lowered the back of the stretcher, and we waited for about fifteen minutes. When the fifteen minutes were over, my English became fluent. Eric and I were relieved, and the neurosurgeons had proved their hypothesis: taking out the bone plate had caused my brain to go up. So, when I sat up, the blood couldn’t reach it. That was the reason for my gradual loss of brain function. The nurse rolled me back to the ER “room,” and I stayed there lying down flat for the rest of the evening. Then, a neurologist came to tell me that the doctors had decided to discharge me. I’d never felt so happy in my life. Eric came to get me at 2:30 in the morning under pouring rain. We were home at 4:30 and went to bed at 5 AM. Eric said, “I’m happy you’re back home.” “Me, too,” I answered.
            Now my arm and wrist are stretched; I recovered my balance and the use of my leg; I can flex my foot; I can feel my hand and know where it is; my left vision is back; I know what’s left and what’s right; and best of all, I can speak fluently both in English and in Spanish! There’s only one throwback: I have to spend most of the day, and sleep, lying down. But that will be over once the neurosurgeon puts the bone plate back in its place. Although that’s a topic for another chapter…

​In the days I spent in the hospital, since the surgery until discharge, I met all kinds of people and learned to see life from multiple perspectives. Norma, the Jamaican nurse aid, taught me to face the challenges of immigration and foreignness, always confronting new obstacles with a smile. Isaiah, the hospital chaplain, taught me to throw away the arrogance of agnosticism and hear what religion has to talk about. I learned that we’re not independent but interdependent; someone’s always waiting to push us out of despondency into optimism.
And there were many more: Rosalba, the Latin American nurse aid; Karen and Yedbavni, the Jamaican nurse aids; and all the rest of the nurse aids who behaved toward me with compassion and understanding, and showed me how to treat a sick woman who can’t fend for herself and can’t even express her needs.
The ten days that seemed like a century gave me time to stop, step aside, and think. Yes, I spent ten days feeling lonely and helpless, and fear overwhelmed me. But these days gave me the opportunity to meet and chat with new people, and to reflect upon the questions life poses us. While I won’t find the answers, I will be different from the person who was admitted to the hospital a year ago.

​On Tuesday about three weeks (a year!) ago, when I was doing my customary downward stretch (a yoga pose for hemiplegics, as I call it: sitting on a chair, interlacing my fingers so that I can stretch my left arm, and bending my wrist down and curving my body backward as much as I can), Nathan noticed blood on the floor. Eric picked it up with his fingers and looked at it, and saw that it was mixed with clear liquid. Then, he looked at my scalp and saw deep marks. I told him to call my neurosurgeon’s office, and the nurse told him to take pictures and email them. After some time, she called back and said that he should drive me to the ER at the hospital and someone would be there waiting for me.
The trip marked the beginning of a rough journey: from the ER, to the image department to have a brain MRI; from there, with an IV on my arm, back to the ER; from the ER, to the operation room to have surgery; and from the OR, to the recovery room, where I had to wait until Thursday 5 AM when they transferred me to a room in the ICU. The ER was full of noise. Nurses were running back and forth responding to emergencies. There were screams and loud conversations. We had to wait for hours dazzled by strong lights. Finally, the results showed an infection on the scalp, which called for brain surgery. The morning after, the neurosurgeon told me that the surgery had gone well. They’d taken out the infectious tissue and sent it for culture. The bone plate was clean, but they’d taken it out just in case. And I’d be moved to a room, despite the hospital’s being full to the brim.
I was finally transferred to the ICU, to a beautiful room overlooking the river. Yet, I experienced the sense of helplessness that being far away from potential help makes you feel. Everywhere you looked at I was hooked on lines: to monitors that checked my Oxygen, blood pressure, and heart rate; to “boots,” as the staff called it (inflating cuffs put on my legs to prevent blood clots from forming on my veins); and to plastic bags with fluid and IV antibiotic. I was prisoner on my bed; when I had a need that required me to move away from it, I had to press the call bell and wait for the front desk to call whoever would be free – the hospital was in dire need of staff because of the COVID epidemic.
After ten days of IV antibiotic, they discharged me. I spent ten day days in solitude after Eric had come visit and left NYC for Beacon to stay with Nathan; ten nights in solitude, in fear, waiting for the sedative to make me sleep peacefully. The day I was discharged, I spent twelve hours full of mistrust, checking if they’d sent the form for Eric to sign and if they’d brought me the wheelchair (Eric wasn’t allowed to bring our wheelchair from home). Finally, when we crossed the threshold of the hospital and my chair’s wheels hit the sidewalk, I breathed a sigh of relief.
Eric and I felt very happy to be in Beacon. When we finished our daily routine, I fell fast asleep and didn’t wake until twelve hours had gone by. It was a great New ¥ears Eve celebration: despite the fear and anxiety it caused in me, I was very, very happy to be home.
 

​When I was young and still living in Argentina, I never went to services: like many Argentine Jews, I’m an agnostic. Our Eastern European ancestors were observant, but most of our immigrant grandparents were not. I had a socialist parental grandfather, and my parents used to take me to services when they visited my mother’s parents in the High Holidays – that was the extent of their observance. Yet we celebrated Passover and Rosh Hashanah, and my parents considered themselves deeply Jewish. And despite their lack of connection with Jewish religion, they sent me to a Hebrew day school, where, in addition to the language, I was taught the Old Testament along with Jewish traditions and songs. So, although I didn’t believe in god and avoided services, I knew religious songs fairly well and could read the prayers and psalms in their original language.
When we moved to Beacon, as Nathan started to become a toddler, I wanted him to get a Jewish education. And in a small town, the only way to join a Jewish community was through a synagogue. Luckily, the only synagogue in Beacon turned out to be full of open-minded, community-oriented members. So, we felt at home there, even though I was a secular Jew, and Eric, a son of Quakers. We became friends with a lot of them, and with the cantor as well (I talk about Ellen in several chapters).  
As I’ve mentioned before, since recovering from my injury I’ve had plenty of time to read. A friend recommended The Weight of Ink, a historical novel about the life of Portuguese Jews in eighteenth-century Europe. As I was reading, I came upon a translation of a song we usually sing at services. I immediately remembered the lyrics and melody, and started singing it in Hebrew. And I felt joy as I sang. The lyrics didn’t matter; picturing myself joining my voice with other voices in the synagogue’s basement brought a sense of comfort. Alone in bed, I traveled to the past, to a small room where I was surrounded by affection.

​A few days ago, Eric remembered riding in a car with his parents around this part of the state. Every time they crossed the bridge, he would hear the same song playing on the radio – a 1970s hit. He tried to recall the name of the song, but it wouldn’t come to mind. I suggested “I will Survive” sung by Gloria Gaynor, and he thought I could be right. The conversation segued into Motown and R & B, and I asked him to play “I will Survive” on YouTube. We started dancing right away, Eric standing up, and I, in bed. I had so much fun that I decided to pedal the bike with my hands to the rhythm of “I will Survive” and “Hot Stuff.”
When the day came, I asked Eric to play those songs again. Eric obliged, and as soon as I heard Gloria Gaynor’s powerful voice, I started pedaling faster and “dancing” (aka moving the top of my body) all the while. And as I was dancing, my eyes welled up: I recalled another conversation with Eric, in which I’d learned about what had happened to me after I was already settled in a room in the hospital waiting for the operation; how I’d stopped swallowing and breathing, and the neurosurgeon and his team had to intubate me and perform an emergency operation. Eric said the neurosurgeon had saved my life. I remembered nothing about this episode – all my memories were about the (non-existent) first operation to extract my hemangioma.
After more than three years, I found out that I hadn’t had one but two death-threatening experiences. This discovery lent the song its actual weight. Listening to “I Will Survive” elicited in me the combination of three feelings: euphoria, desolation, and a will to look forward instead of backward. My cousin had been right (I write about her comments on another chapter). Doing my exercises faithfully meant more than listening to self-imposed high standards – it meant having a strong determination to live.

​As part of my rehab, I have to do exercises with my left hand: I have to relearn to move my wrist and open my fingers. This means that the muscles in charge of extending my fingers (the extensors) have to learn to obey my brain’s command to tighten. This means doing ten reps of the same exercise: relax my fingers; once they are beginning to relax, pull them very slowly with my right hand, and combine relaxing with pulling until I feel resistance from my left fingers; then, let go of these fingers and wait for them to close; and make a tight fist.
Since my injury, the extensors have been paralyzed, which has let the flexors (the muscles in charge of bending the fingers, in other words, of closing the hand) take over. As a result, the flexors have been dominating my hand’s movements. Yet, thanks to the action of a splinter that we’ve been placing on and off, my fingers have gone from totally to partially closed. So, this exercise is a dynamic between pulling to the outside to open the fingers, and pulling to the inside to close them.
I think of it as a battle between the right and left fingers; the right fingers want to pull the left to the outside, but the left resist. Both enemies are determined to win – it’s a battle to the death. To teach my fingers to open and thus be able to grab things (which would make it possible to do almost anything, from cooking to reaching a bottle of shampoo), I have to strengthen the extensors gradually. That way, they will take over my fingers’ movements and the victory of the right fingers will be assured.
Kelly, my former occupational therapist, came over to assess my (limited) progress and device new exercises that would help my arm movements improve. When she came, she referred me to Sabashni, one of her colleagues from the time she used to work in New York, whom she recommended warmly. Eric and I called Sabashni, and she agreed to help me. I went to her office on Saturday, and she was pleased with what she saw. So now she will teach me and Tammy, my nurse aid, new exercises to improve the movements of my left arm and hand. Then, I will do endless repetitions of these exercises, and the right fingers will triumph.

​ It was my walking day, so I was walking with the crutch inside the wooden rail. I did one lap, handed the crutch to my nurse aid, turned (I usually walk with the crutch and turn while holding on to the bar), and started walking around the rail again. When was about to hand her the crutch to start turning, she told me to keep walking. I was puzzled by her instruction – I found it unusual – but kept walking. Then, she repeated it, and repeated it once again. And I kept going despite my bewilderment until I got to the wheelchair. Then, she told me to turn and sit down.
I asked her why she had told me to keep going. Because I’d said I wanted to move my walking to the dining room, she answered, and she wanted me to feel confident about taking that step.
The Sunday before, I had mentioned that I wanted to go back to walking from the dining room to the kitchen and back, as I’d been doing every Sunday before the side effects of the Fycompa started (I write about it in a previous chapter). But she’d said she thought I wasn’t ready yet. And she was right: no sooner had she finished her sentence than I’d realized I was still scared. What if I lost my balance? It had been a long time since I’d last walked with the crutch without the sense of safety I experienced thanks to the boundaries of the rail. Yet this time, a week later, I’d crossed the threshold of the rail and kept walking with the crutch without anybody’s help, and nothing had happened: I hadn’t fallen. I felt so happy. It was progress! A tiny progress, but progress no less.
This improvement seemed small but was actually huge. By crossing the threshold of the rail, I had crossed a boundary –  the boundary of my fears. And I had crossed another boundary: the boundary of self-criticism and high standards. According to my standards, the progress I’d made was inconsequential, but I was able to feel happy to have made it. My happiness meant that I could pay less attention to quantity and more to quality. It meant that I had crossed a barrier and would start walking forward.